When I ask you to play, play with me.
When I’m building a tower, join me.
When I’m singing a song, sing with me.
When we’re eating a snack, share with me.
When I’m being silly, be silly with me.
When we’re together, include me.
Many of you know we had Sienna’s first IEP meeting last week. Our goal for her education, this upcoming year, is to learn social skills and make friends. It’s really that simple. She’ll be in school two days per week.
After her IEP meeting and evaluation, we were told that she qualifies for speech, PT, OT, and developmental therapy. They will come to her school. Some of them will integrate into the classroom. Others will pull her out to work. I’m glad that she qualifies, because she deserves those services. We live in Pennsylvania. It’s one of the best states in the country to have a child with a disability, and that is not something that’s lost on me. Our Medicaid services allow Sienna to continue outpatient therapies at the Children’s Institute outside of school time. Next year, she’ll still receive 4 therapies per week from them.
Now, I have to decide what’s best for her. Do I want these additional therapists coming in and out of her classroom during what’s already a short week of school? Am I holding her back by not using the therapies? Am I holding her back from important social time by agreeing to these therapies? It’s been weighing on me. I have time to decide, to process the pros and cons.
It’s easy to get lost in the IEP process. You watch your child being directed to perform tasks. You have 4 people asking you questions about your child….Does she walk backwards? Does she know the names of articles of clothing? Is she able to go up and down steps? How does she hold a pencil? Can she turn a page in a book? Does she isolate her index finger?
It’s easy to lose track of that goal you mentioned in the beginning of your meeting….social skills and making friends. For our family, that’s what preschool has always been. It’s a place to play and make friends. Down syndrome doesn’t change that.
This picture is Sienna and one of her buddies. They’ve known each other their whole lives, and they start preschool together this fall. I watched them play yesterday and it gave me all the feels. It grounded me and reminded me that this is what it’s about. This is what she deserves. She deserves to share snacks, to giggle and be mischievous, and to play with her pals. I’m still not sure how it will work out, but I’ll make damn sure her experience at school is everything that she deserves. Her buddy reminded me of that yesterday.
It’s easy to get lost in Down syndrome. It’s easy to forget that at the end of the day, Sienna’s just a kid that wants to play with her friends, whether or not she can hold a crayon, use a utensil, or how many words she has. At the end of the day, she’s just a kid starting preschool. #justakid #inclusion #downsyndrome #actuallyshecan #presumecompetence #theluckyfew #scootoverandmakesomeroom